Caleigh Wallace Brophy has torn a room apart, upended tables and been kicked out of her SickKids program, all for refusing to eat.

Caleigh, 18, started having problems with eating in Grade 6. Within two years, it became life-threatening. By then, she’d shot up to five-foot-two, but weighed just 98 pounds and had an irregular heartbeat.

At SickKids, a team of specialists help children like Caleigh reclaim their lives.

Dr. Cathleen Steinegger, head of the eating disorders program, says the conditions kill at least as many children as leukemia does.

“This is an illness that can affect every organ system in the body,” she says. “Of the causes of death, the most common is cardiac, but there’s also a very high suicide rate.”

About 90 per cent of the people who develop eating disorders are female. Steinegger estimates it kills about 20 per cent of them.

Caleigh started treatment at SickKids in 2009, when she was 15. For eight long months, she made the trek every weekday from her home in Waterloo to Toronto on a Greyhound bus, arriving before the 8:30 a.m. start and staying until 6:30 p.m.

“I put up a pretty big fight,” Caleigh recalls. “I had to sit there and deal with my anxiety. I felt naked, exposed, and had to talk about things I didn’t want to talk about.”

The intensive treatment requires the active participation of the patient’s family. Every Friday, Caleigh’s mother, Julie Brophy, her father, Miles Wallace, and her brother Liam, 11, took part in the therapy.

“(Parents) fed their child before they had the eating disorders, so they can do it (again),” Steinegger says. “Sometimes it involves sitting with your child a very long time and getting her to eat one more bite than the child wants to. It’s hard, it’s stressful, but it’s successful.”

The treatment required Caleigh to eat three meals and two snacks during the course of each day.

“Before the treatment, I had a cup of orange juice, a piece of toast with peanut butter, no lunch and I’d throw up dinner. That was every day,” Caleigh says.

The eight children who attend the program each day are supervised by two staff members during meals. Caleigh says they must follow strict rules at the table: They cannot wear clothes with pockets, they must keep their elbows on the table with their hands visible at all times, plates must be completely emptied, and drink containers drained to the last drop.

“I’ve seen crazy things: Wiping butter on the back of your neck so you wouldn’t have to put it on your toast,” she recalls. Worst of all, staff check the toilet bowl after every trip patients make to the bathroom, until they can be trusted.

Between meals, they participate in cognitive behavior group therapy, to change the black-and-white thinking characteristic of the illness. Other sessions deal with such issues as body image and the effects of starvation on health. They also get schooling geared to their grade levels.

Steinegger says the illness cuts across all ethnic backgrounds, but research suggests people who develop it share certain personality traits. Perfectionist, anxious and high-achieving people with a tendency to depression are at higher risk.

Caleigh’s mother says her daughter’s ordeal began with the early onset of puberty. She reached her full height before she finished elementary school, and classmates made fun of her.

Caleigh also suffered from attention-deficit hyperactive disorder (ADHD), which contributed to poor marks.

She is also prone to depression and anxiety. As a 6th-grader, she attempted suicide. The rush to the emergency room led to two years of counselling and a prescription for Concerta, a drug to help her deal with the ADHD. However, the drug suppressed her appetite and caused her to lose weight, which made her feel better about herself.

“I started lying about how the medication made me feel, so I could keep upping the dose and use it as a diet pill,” Caleigh says.

In high school, classmates envied and praised her extreme thinness.

She describes her thinking this way: “If I’m fat, no one will love me. If I eat, I’ll get fat. Therefore, eating is bad.”

Even though she sought help from a pediatrician, a psychiatrist and a counsellor at Trellis, a mental-health organization in Waterloo, her physical and mental health failed to improve.

“This is a disease that needs intensive treatment by specialists,” Steinegger says. “Should we be doing more outreach in the community for earlier recognition? Absolutely.”

She says the SickKids program has a high success rate, with about 75 per cent of its graduates doing well.

Caleigh says she’s much better now.

“My younger years were really rough, but I feel I’m stepping into adulthood on the right foot.”

Eating disorders

Anorexia nervosa: Severe food restriction, often accompanied by excessive exercise. It affects up to 1 per cent of adolescent girls. It also occurs in boys and younger children.

Bulimia nervosa: Cycles of binge-eating and purging. Bulimia affects up to 4 per cent of teenage girls, although it also occurs in some boys.

Eating disorder NOS (not otherwise specified): This is a diagnosis for children and youth with serious eating disorders that do not meet the criteria for anorexia or bulimia.

Binge eating disorder: A new diagnosis for children and youth. Unlike bulimia, binge eaters do not vomit, purge or skip meals to compensate. Children with this disorder are often obese.

Fast facts

Eating disorders affect females more than males; about 3 per cent of women will be affected during their lifetime.

Up to 4 per cent of women will develop anorexia nervosa.

Up to 4 per cent will develop bulimia.

About 2 per cent will suffer from binge eating.

Biological and personal factors contribute to the condition, as does society’s promotion of a thin body as the ideal.

Eating disorders carry a high risk of other mental and physical illnesses, which can lead to death.

Since 1987, hospitalizations rose by 34 per cent among girls under 15, and by 29 per cent among young women 15 to 24.

Warning signs

Unexplained weight loss.

Fear of gaining weight.

Dieting behaviour.

Increase in picky eating, especially eating only “healthy foods.”

Hiding food in napkins, or cutting food into tiny pieces.

Always going to the bathroom immediately after eating.

Large amounts of food missing.

Evidence of online visiting of pro-anorexia or eating-disorder websites.

Source: Health Canada, Ontario Centre of Excellence for Child and Youth Mental Health. For more information, go to mentalhealth.ca.

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